Winking at Fear

Yesterday, I turned a year older. And, it has officially been 4 years, 3 months, and 25 days since I was diagnosed. I have had three brain surgeries. I have tried almost every brain tumor diet on the planet. I have gobbled hundreds of thousands of pills. I have researched. I have exercised. I have meditated. I've dodged seizures; I have endured them. They've injected shot after shot to boost my immune system, and to fight my tumor. I've done the high dose IV drips. I drop venom in my nose, and I swish it in my mouth. I've traveled the country, and around the world, to meet with doctors for second opinions, for surgeries, and treatments. All that, and so much more, and yet I feel like an imposter, like this isn't my life.

I got the email yesterday, a great birthday surprise, that I am included with five other bloggers to be posted on the National Brain Tumor Society website. As I read the other posts I felt like a voyeur, like I didn't belong. It's confusing because I relate to so many of the things that they wrote, yet, with others I have no experience: radiation, chemo. It's as if they were long lost family members; we had never met, but somehow I recognized myself in their faces. I loved the variation of stories, of perspectives, of journeys. The voices, although different, carried similar threads of hope, fear, frustration, gratitude, and determination. Everyone had gone through a lot, whether it had been surgery, or treatments, or a combination. But some of these fighters truly astound me with what they are conquering, what they're capable of enduring. I read the blogs yesterday but I keep coming back to reread them, trying to soak it all in. When I was first diagnosed I tried support groups and they were horribly depressing. In contrast, I'm finding that those who chose to blog about their experience aren't just wanting to connect, they want to help. They want to reach others, far and wide, in the hope that their experience will save another some trouble; to help connect the dots faster.

I am now 34 and it feels old. It feels solid, grounded in my situation, in my brain tumor reality. Kind of stuck. And in my life of contradictions, I feel removed, and floating. I was emailing, the other day, with my cancer buddy Lo, and we were recognizing how you get diagnosed, then everything stops. You keep swirling through scans, and treatments, and scans, and treatments, and year after year you get older but your world stays the same. You try not to, but from time to time, you can vividly imagine where your life would have gone, the road that was washed out before you. 

This year, to distract myself from my inevitable hamster wheel of treatments, at the recommendation of my buddy who did the same for her 34th year, I have decided to do as many things as possible (within reason) that make me uncomfortable, that scare me, that push my limits. I envision lots of nervous laughter, and triumphs. Probably a good deal of sweat, and awkwardness. Living with cancer/brain tumors makes it impossible not to live in some state of fear. More so than most. I challenge myself to open my arms this year to fear, to look it in the face, cock my head, and give him a wink, then jump.

So cheers to another year! This time, instead of cancer pushing my limits, always cancer driving my fear, or cancer making my life uncomfortable, I will take control and steal away some of cancer's power. I'm ready for a different type of fear, and a better adrenalin rush.

Here's a few photos from my birthday celebration, checking out Crystal Mountain, with Dan (including my attempt at a photo bomb). The year is already off to an exciting start... 

Moan & Gripe With Me

Last night, while I was in the shower, I started thinking about how goofy I am. Instead of being excited about the jog halfway around the lake, and concurrent walk the rest of the way home, I was disappointed in myself. What the hell? How backward is that. Instantly, I started laughing to myself and changed my thinking. Exercise is exercise. I flashed back to the days I was in the ICU. I remembered the paralysis on my right side. I remember not being able to walk more than a few steps without being winded and exhausted. I remember months of slowly training to start jogging again, and eventually, my first 10k. I have everything to be grateful about. I might get tired, and yes, that's disappointing, but I'm still here. I'm still nourishing my body with nutrients, sleep, exercise, meditation, and cognitive challenges like reading. My mind and body may be tired from time to time, but they are also the most healthy they've ever been. Sometimes, more doesn't mean better. I don't have to run five miles to get the same results. I just need to do quality exercise, breathe deeply, use it to rejuvenate my mind, and be grateful for the opportunity to work my body. There was a time when nurses told me I might never jog again. I have happily proved them wrong. When I'm down or frustrated, I have to remind myself that, if there's a down side, there's always an up side. I already feel better. Still tired, but much happier! And that's what it's all about :)

Last night Danny got a kick out of my study session. I've been reading the book, Cancer: 50 Essential Things To Do, by Greg Anderson and taking notes. I'm researching the way to navigate through this diagnosis, and learn from survivors. I figure, those who have fought the cancer fight, have learned things about attitude, nutrition, spiritual well being, and much more. The only way to be successful is to learn from others and use a whole body and mind approach. Anyway, I didn't realize he was taking a picture - he thought I looked "pretty cute" all wrapped up in furry blankets. Danny calls me a pillow monster. I somehow manage a way to turn our bed into a mass of pillows, and fluffy blankets. I like my nooks to be cozy and safe.

Just before bed, after I turned out my lamp, I stretched out, closed my eyes, and pictured my body hovering above. I just wanted to picture my body and see what it looks like in my mind's eye. The moment the image appeared in my mind, I noticed there was a light blue, and medium turquoise blue color surrounding my body. It morphed and phased into white light, then pale blue, white, pale blue, finally resting on white as it surrounded my body. The colors oscillated around the peripheral of my body - with no particular section of interest. It was really interesting. It felt good. It felt positive.

I believe that I can make myself healthy, with help from western medicine, alternative treatments, nutrition, spiritual well being, stress regulation, exercise, attitude, and enough sleep. I'm realizing that there's a lot of dedication needed, but it's all for a great purpose, and it helps me excel in all areas of life. Sure, I would love to be sipping on a mammoth goblet of red wine, nibbling on truffle-infused sheep cheese, but seriously, who cares (and someday on a special occasion.....). We can't do everything we want, eat whatever we want, and have whatever we want. That's life. The most important thing to remember is that I have the opportunity to earn my health, and each time I earn something, each time I meet a goal, I'm fulfilled and proud of myself. I just have to give this more time so that I end up looking at this as a lifestyle and not a diet or temporary thing. There will be times when I can take it easy, but I need to earn it. This whole body approach is proven to improve overall health, and that's my goal. I have to stay focused and enjoy the positive effects of the changes in my life since my last MRI. My skin is clear, my weight is down to 140. I'm more calm, and my headaches are minimal. Of the 43 days since making these changes, I've only had 3 or 4 days of headaches. That's amazing.

This diet is not what most people choose to do with their lives. It's quite extreme. But, unfortunately, it's how we should all be eating. I wish it wasn't the case. I wish we could eat sourdough, homemade pizza, jelly, cookies, and all the yummy, white carb, white sugar foods that taste so delicious. The sad truth that no one wants to acknowledge (because it sucks) is that sugar (other than in whole foods) is very bad for you. White flour is very bad for you, white potatoes are bad for you, and table salt is bad for you. If there are ingredients in your foods, you should try not to eat them. Foods should be coming from the source. The problem is that people are busy, or tired, or it's expensive, or whatever. Usually, it takes someone getting sick to change their ways. Sometimes, even then, people don't change. I'm not saying that I can cure this brain cancer just with food choices. I wish that were true - and who knows, maybe I could, but the point is that we need to give our bodies a fighting chance. A platform to succeed. Even if you can't seem to give up all of the bad stuff, just try to cut back. You don't have to be as extreme as I am. Start small. Choose oatmeal over cereal. Choose a spinach salad over iceburg lettuce. Choose a quinoa salad over a potato. Choose brown rice over pasta. Choose steamed broccoli over honey carrots. Choose vegetable soup over clam chowder. Avoid the bread basket. You always have a choice. You DO have the will power if it's important to you. Make your health your priority. If I can do it (even though I moan and gripe), you can do it too. Moan and gripe with me!

Day 3: Broccoli Sprouts

Things are not looking very good on the sprout front. I'm actually afraid to take a photo to share...I'm going to suck it up though, and go take one. Cringe. Ugh. I don't know what I'm doing wrong. My mom said this was going to be, and I quote, "Sooo (very exaggerated) easy."

I'm so disappointed with my sprouts. Good grief. I'm capable of growing things outside! I swear! Here's some proof. It's not quite the garden from last year, but there's still a bunch of delicious and beautiful things in there.

Apparently, my wild bunny has hankering for the spicy stuff!

Last night, Danny and I were sitting on our patio when we heard a hummingbird swing through. Dan grabbed the camera, and took the follow photos. As you can see, the little guy wasn't exactly the hummingbird we were expecting...

Click To See A Larger Photo

See what you think. I'm on Team Moth. He's pretty when he's looking away, but jeez, that mug is a face only a mother could love.

This is what I do to distract myself from the unknown. I'm scared about the seizures. The other night I woke up at 3:30am and I had a sort of panic attack, or crazy headache, I'm not sure exactly what it was. I don't know how to explain it. Anyway, my mind was going a million miles per hour with thoughts, then everything went blank. I felt like I was about to have a seizure. It was very scary. I ran to take my pre-seizure pill and then laid on my back in bed, trying to practice my meditation breathing technique.

I don't know what else to do. I take my seizure medicine and I sleep as much as I can. I exercise regularly, I'm only running 10-11 minute miles for 30-40 minutes every other day, but I'm working toward going faster again. The only other key, that I can think of, is a healthy diet. I'm not sure what else I can do. I'm reading a book about meditation and trying to practice stress management. I honestly am at a loss. I think I seem completely normal to people, but I sleep so much, and I'm exhausted constantly. I try to put on a happy face, and usually that's a true feeling not a facade, because I don't want to focus on the scary stuff, but jeez. I feel like I'm continuing to deteriorate. Specifically since the seizures.

Thankfully, my parents noticed my difficulties and talked to Danny. We had all been feeling like we were sitting, waiting, for doctors to radiate my brain. They aren't proactive, their specialty is radiation. Anyway, now we're trying to take another avenue. My parents contacted John Hopkins University for an appointment. We're hoping that they'll review my medical records and they can help us figure out another step in my care. We want to do more preventative stuff. I don't want to waste a moment. It's better to stop the growth than to try and resect again, or radiate.

I know it's pointless to stress about my health, in fact it's detrimental, but those who are around me all the time (my mom, dad and Danny) can see changes in my capabilities. That scares me. And, it scares me that it scares them. I wish this whole tumor debacle would just evaporate, just *POOF* be gone. My parents should be hosting BBQs with friends, laughing and living their lives. Danny should be dreaming about having a life with babies, the family he has always wanted. Kaal shouldn't be worried about his little sister. The rest of my wonderful family, Danny's amazing family, my beautiful friends, everyone - people shouldn't have to worry about this stupid tumor. I don't want to cause stress, but I can see it in people's eyes, and I can see it in their tears. Sometimes the tears are happy ones, other times they come from heartbreak. I'm sorry that this tumor is growing. I honestly thought I would be an exception. As Susea likes to say, "Shoot. Some lucky dog has to win." It's tough to be in that 1%. There's a lot of competition.